Leaving a legacy of love

Eileen Hagarty can no longer walk or manipulate her right hand. Next year, her doctor says, she'll probably begin gasping for breath as paralysis climbs up her torso.

Hagarty, 60, has amyotrophic lateral sclerosis, a disease she dreaded above all others while working as a respiratory nurse at Edward Hines Jr. VA Hospital, just west of Chicago.

She knows full well the dimensions of this relentless condition, which will strip her of the ability to move, to swallow, to breathe, even to blink, while leaving her mind torturously intact. She's also acutely aware her time is running out -- her doctor says she might have only two to four years left to live.

Yet Hagarty has found a way to cope with the terror and despair that often seize her heart. As her physical state weakens, she is focusing her energy on leaving a legacy of love for her family.

For her daughter Rita, she bought a set of pots and pans, the kind of gift a mom wants to give a young woman who will be starting her own household. Rita, 24, now lives with her parents in Darien, working as a teacher's aide during the day and helping tend to her mother at night.

For son Patrick, Hagarty bought a series of video sermons, "The Be Happy Attitudes," that brought her substantial spiritual comfort several years ago. Patrick, 29, a financial analyst, doesn't talk easily about his feelings, but Hagarty knows that they run deep and that he hates seeing her suffer.

For her husband, Jon, 63, she has ordered a black T-shirt with white lettering reading: "Dear Jon, See you later, Love Eileen," for him to wear after her death.

"We have a thing in this family about saying goodbye. We don't do it," Hagarty said, smiling wryly while struggling to hold back tears.

"It's an amazing thing for someone to be in her situation to be thinking about other people, their needs, what may make their life easier," said Dr. Julie Rowin, Hagarty's physician and director of the ALS clinic at the University of Illinois at Chicago College of Medicine.

It doesn't stop there. Hagarty has set aside christening outfits -- one for a boy, one for a girl -- for the day when Rita and Patrick have children. Strollers, car seats and baby clothes are packed away. There's even a bumper sticker for her home health aide, Ofelia Undug: "World's Greatest CNA Caregiver."

"A very nice ... a very organized person," is how Undug describes her patient.

Each family member, including Hagarty's beloved sister, Rita Risatti, will get a condolence card and a letter from Hagarty upon her death.

"I guess I'm a control freak," said Hagarty, who was diagnosed with ALS in February. "But this disease takes everything from you and there's not a darned thing you can do about it. I have to keep doing and planning or else I'll go crazy."

Hagarty has chosen the songs to be sung at her funeral, the comments for the program, the cemetery plot where she will be buried, the writing to be engraved on her tombstone. There are cards for Rita's and Patrick's weddings, the birth of their first child, the child's first birthday -- all written before Hagarty lost use of the fingers in her right hand.

There are copies of M. Scott Peck's famous book "The Road Less Traveled," to be given to Rita and Patrick; a tape-recorded version of " 'Twas the Night Before Christmas" for holidays to come; and a video testimonial made with help from Rainbow Hospice and Palliative Care, which has been caring for Hagarty at her home since late July.

Because ALS is so unpredictable and the condition is lethal, hospice services are appropriate, a Rainbow spokesman said.

Then there is Hagarty's diary, begun when she was struggling with despair over being diagnosed with a disease she considered more horrifying than any other.

"I was a person who loved her husband, daughter and son with all her heart and soul," it begins. Subsequent pages detail many joys -- swinging in her backyard, lilacs and roses, Lincoln Town Cars, hayrides, Perry Mason, panda bears -- and some regrets: "I did not pray enough."

"During my entire life, I was very frequently wrong when I thought that something would happen the exact way I thought it would happen," Hagarty wrote, confessing a streak of perfectionism.

When Hagarty began noticing weakness in her right leg in 2007, doctors thought the problem was associated with a herniated disk. Three back surgeries followed between December 2007 and June 2009, accompanied by physical therapy, but the nurse kept getting weaker.

At the Hines VA hospital, where Hagarty specialized in helping people with breathing problems, she used a scooter and kept a brave face.

"We knew she was having a hard time walking, but we thought it was complications from her surgeries," said Patricia Moss, Hagarty's supervisor and associate chief nurse for long-term care.

Hagarty had worked at the medical center for almost 39 years, earning deep respect from colleagues for her discipline, commitment and professionalism.

"Anything she took on, she went at it 150 percent," Moss said, adding, "Everyone was shocked when she left."

Hagarty told no one at Hines of her ALS diagnosis and declined a goodbye dinner after leaving the job she loved. Months of depression followed as she was overcome by feelings of loss. Her sister and her family arranged rotating caregiving duties, but tempers flared under the stress of Hagarty's deterioration and their sense of helplessness.

All Hagarty could think of was patients she'd treated at Hines who were "just eyeballs looking out at you with everything else -- every function except their awareness and their feelings -- gone."

Things began to shift only when her sister pleaded with Hagarty to return to the moment and the people who loved her.

"Focus on what you have ... on the good you can still do," Rita Risatti remembers saying.

The sisters had lost their mother to cancer when they were young, and Hagarty realized she didn't want to go as her mother had, without any record of her thoughts and feelings left behind. Soon, she began to write and shop over the Internet, planning the gifts and memories she would give her family and getting intimately involved in her medical care.

Acceptance dawned and, with it, the desire to let people know what she was going through. Hagarty had not told anyone outside her closest family of her illness, but last Monday she announced it to 60 friends, cousins and former co-workers in a Christmas letter.

"I guess I don't want my last message to people to be (that) I denied the whole thing," she said.

"Eileen is extremely resilient and courageous, and her emotional journey has been just amazing," said Nicole Sammartino, patient services coordinator for the ALS Association Greater Chicago Chapter.

"As a nurse, Eileen tried to help her patients focus on the positive aspects of living with their diseases. Now she's trying to practice what she preached," said Mary Schick, her case manager from Rainbow Hospice.

As for challenges that lie ahead, Hagarty is characteristically decisive, motivated by a desire to spare her family and herself undue suffering.

Terrified of being unable to breathe, of choking, she has told her husband and her children she does not want to be placed on a ventilator.

"Absolutely not; I don't want to live like that," she asserted recently when a visitor came to her home.

More than 85 percent of ALS patients similarly decide to forgo mechanical ventilation, said Rowin, Hagarty's doctor, acknowledging that's a rough estimate.

Jon Hagarty knows he hasn't come to terms with that decision.

"I'm reconciled to it because it's what she wants, but when push comes to shove, maybe she'll change her mind," he said, sitting in his living room next to his wife.

Hagarty's daughter said it tears her apart to imagine what her mother's decision means.

"When she got her 'do not resuscitate' papers ready, it almost killed me because I'm thinking: What if she's dying in front of me and I'm not able to do anything?" the young woman said, breaking into tears.

Son Patrick said he wants his mom to hold on as long as she can.

"As long as she is able to pull even a little bit of joy out of life, as long as you see a smile on her face, then life is worth living," he said.

As for Hagarty, she tries not to think too hard about the future, filled with darkness. Instead, she counts her blessings today.

"The wonderful caregiver that somehow I was so lucky to find," she said. "Financial resources that have allowed me not to go bankrupt. Our new van that lets me get out of the house. My hospice people, they're wonderful; my nurse, she's an angel. And the love and support of my family and my sister, above all else."